Hearing noises.: A few weeks ago I had a flare... - Vasculitis UK

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Hearing noises.

jackrussell
jackrussell
8 Replies

A few weeks ago I had a flare, it eventually calmed down with medication, however my symptoms usually involve ( amongst other things ) ears and sinuses with some loss of hearing , but this time I am suddenly hearing almost continual loud humming/ buzzing and music in my ears , I am very concerned about this as I am at a loss as to what to do about it. I suspect it’s some form of tinnitus ,but it hasn’t happened before . I have 2 hearing aids due to the Vasculitis, I just wonder if anyone has experienced this,and what ,if anything can be done about it. I am not feeling I’ll at the moment and I try to ignore it ,but it is very unpleasant.

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KellyInTexas

I do not mean to cause alarm at all, but please let your doctor know . The temporal lobes are known as the musical lobes.

Temporal lobe epilepsy can sometimes cause you to incorrectly hear music that’s not real. So can a small TIA.

A Small TIA can sometimes be a pre cursor to a more serious cerebral vascular event.

Of course, I’m not a doctor. I do not mean to cause unnecessary stress.

I am , however an epileptic. I have temporal lobe epilepsy, and my neurologist recommended the book The Man Who Mistook His Wife For A Hat to me, by Dr Oliver Sacks. One of his patients hallucinated music. Of course, so have I, since childhood. I never knew it wasn’t real. It’s only with the onset of partial complex seizures.

( I didn’t even know I was having seizures!)

In dr Sacks’ patient’s case, it was stroke damage to the temporal lobe.

So hearing music needs to be seen right away I think.

Vascular swelling in my brain also causes visual hallucinations... currently I’m in Rituximab and steroids to bring it down.

( underlying cause of all these troubles is Lupus / Anti Phospholipid Syndrome-antibodies causing havoc on the lining of the vessel walls for a very over simplified explanation. )

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jackrussell

Thankyou for your reply, I will get in touch with my consultant tomorrow ( hopefully )

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KellyInTexas

Very good- hopefully your consultant will tell you something very interesting and encouraging. Maybe just some steroids for swelling will resolve your personal Bose system!

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DazVin

I have GPA and almost deaf now, I do have hearing aids that help. When I was very ill I heard all sorts but the main thing I do remember was a contant electronic tune in my head that was kinda like SuperMario at 100mph! Since becoming deaf I very ofter get a high pitched noise mainly in my worst ear (tinitus), this mainly occurs when I am more tired though and I've learned just to live with it.

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Tbrz

Oh I feel for you, it sounds like tinnitus to me - but I am not a doctor. It just sounds very similar to my own issues. I have GPA, which was diagnosed in 2016 after 18 months of serious sinus, hearing loss, bleeding ears - a result of this late diagnosis is I have been left with very bad tinnitus. Sometimes it’s so loud that my head feels it is vibrating and will wake me up. Unfortunately the consultant feels it is something I will have to live with, which I admit is hard at times as I have constant loud noise in my head. However, mine was quite an extreme case and was not treated properly for a long time so I have a lot of damage, so I hope for you that this is a temporary condition. Best wishes.

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jackrussell
jackrussell
in reply to Tbrz

Thankyou for your reply, I am hoping to contact my consultant today. ,as this is the first time that it has happened I hope he may be able to offer some help, I am now hearing the same tune over and over again ,and it’s not at all pleasant , and I-was woken up around 3am this morning with the same tune,difficult then to get back of to sleep.

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DaveCop

Prior to this ailment I suffered with mild tinnitus, I had my hearing tested and was supplied with two earpieces that transmit white noise, this works wonders. Since the Vasculitis reared it's ugly head I have an earpiece in my right ear most nights as this is the worst time for me. When I'm pottering around at home I like to have a radio playing in the background, the trick is to try and avoid concentrating on the ringing/hissing.

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jackrussell
jackrussell
in reply to DaveCop

Thankyou for your reply ,and it is helpful to know that there is some way to at least tolerate the continual noise.I can see how having a more acceptable noise in the back ground would be helpful, although I,m finding it difficult to avoid concentrating on the noise ( which has now become music ). Since this has happened I have been given a further course of steroids and I am hoping this will give some further relief , as usual with this awful illness it’s a case of carry on and take each day as it comes. Thankyou for your time .

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